Michael Sharpe skewered by @JohntheJack on Twitter

Cinders66 said:
I agree. I was pro SEID and hounded off a group for "betraying PwME", despite being bedridden with classic ME and just wanting to shift away from the CFS mess.
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I'm sorry to hear that @Cinders66. We need to be so careful not to allow honest disagreement to turn into personal attack.

I rather like @JonathanEdwards suggestion of PEMS.

All we can do for now is agree that we haven't found the perfect name. Some of us prefer one, some another. I tend to say ME when talking about myself, and ME/CFS on the forum to be inclusive. Perhaps I should start saying ME/CFS/SEID/PEMS
 
Jonathan Edwards said:
There is always the option of Post exertion malaise syndrome (PEMS).
OR ME/PEMS to provide historical continuity.
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The same group that opposes IOM criteria and SEID as name also doesn't like the term PEM because malaise is too vague. They prefer postexertional neuroimmune exhaustion. Which to me sounds more like neuroimmune babble than a more specific name.
 
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Musing on this topic, I wanted to get the concepts of Delayed Onset and Post Exertion in, but that meant either DOPES or PEDOS, neither of which are useful.

Then I started wondering (more seriously), would it not be worth thinking about it from the reduced stamina/lower energy limit angle? All of our issues essentially come from this. Though I've got to admit I haven't thought of a decent acronym for that yet.
 
Adrian said:
I do wonder if we should have a strategy of taking over the CFS label and making sure people understand what it means in terms of a being a debilitating illness.
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That's my current, personal strategy, where I have the time to have a conversation. I should specifically point out that this isn't the policy of #MEAction, which aims to use ME in all official communications.
 
Trish said:
But for biomedical research I think it's important that any one modest sized project that is trying to home in on causes, biomarkers etc. narrows down the descriptors of those included.
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Agreed! And I would tend to recommend CCC for that. It nets the smallest group out of the whole, which at least means we're looking at a narrower field. Still no guarantee we're looking at the right thing. But a better chance.

Snow Leopard said:
they have been decided by a small group of people and often these people aren't even patients.
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One thing I've learned is that a lot of ME researchers have ME. One of my least favorite things is to be invited to a conference and asked, "are you a patient, or a professional?" ....Excuse me? Let's not do that the other way around. Professionals can be patients.

strategist said:
They prefer postexertional neuroimmune exhaustion.
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Unfortunately, that's "pene". Anyone else here speak Spanish? :facepalm:
 
Whatever name is finally selected we need to have a plan to migrate people diagnosed with CFS to the new name.

In Australia it is extremely hard to get a diagnosis of ME. I was diagnosed with CFS using the Canadian Criteria eight years ago. On every report it says CFS.

I am getting to the point where I don't care what they call it, as long as they respect it.
 
I know the WHO prefer descriptive names (as opposed to names of people) but before long there will be a multitude of similar names and identical acronyms which is going to become even more confusing.
There is already the problem with BDS and BDD.
I thought maybe 'Energy Deficiency Syndrome' but then that's EDS ...........

eta: is there someones law that says eventually every ME/CFS discussion ends up talking about the name?:D
 
Sly Saint said:
I know the WHO prefer descriptive names (as opposed to names of people) but before long there will be a multitude of similar names and identical acronyms which is going to become even more confusing.
There is already the problem with BDS and BDD.
I thought maybe 'Energy Deficiency Syndrome' but then that's EDS ...........

eta: is there someones law that says eventually every ME/CFS discussion ends up talking about the name?:D
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It's in the rulebook. How can you have missed it?
 
Robert 1973 said:
I’m not at all sure that I have what is sometimes termed “classic ME”. Very often I find that I don’t relate to other people’s descriptions of their ME, and I very seldom hear people describing the symptoms which have caused me the most distress. That may be because we have different manifestations of the same illness, or it may be because we have different illnesses. One of my concerns is that someone will find a biomarker for most people diagnosed with ME but that it will not apply to me, and that I will then be left to rot as part of a forgotten minority.
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I know that this is a common worry in the community. However, speaking for myself, I would have no desire to move on and leave people to rot. I couldn't forget my experiences and what I have learned.

If there was a cure, then that would just leave me with more capacity to cause trouble on behalf of the forgotten others. I doubt I would be the only one.

If the situations were reversed, would you walk away and leave other's to rot? I doubt it :)
 
At the moment I am bathing in bleach each night in the hope that the Lightening Process will cure me. If it does, I promise to remain a pain in the neck for all the PACE fans.

Perhaps we should create a new, more inclusive category to replace MUS, within which variants like ME can continue to hold on to their existing name. I suggest EMITS – eternal medical indifference to suffering.
 
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JaimeS said:
But then I realized how many people had the CFS label while still having or even all of my symptoms: they received that label because of geography. For example, Chu's recent paper showed that 90% of Fukuda-diagnosed people in her study had PEM -- implying that many people diagnosed with Fukuda would also qualify for ICC. We could say that their diagnosis should shift then, but again it all depends on access. Fukuda certainly doesn't forbid PEM as a symptom, it just doesn't require it.
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The wording in the abstract might be a bit unclear but the figure is actually 99%:
Most subjects (N = 129, 90%) experienced PEM with both physical/cognitive exertion and emotional distress. Almost all (N = 143, 99%) were affected by the former trigger but 14 (10%) reported no effect with the latter trigger.
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Though if it was based on a random population sample, I imagine the figure would be less.
 
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Dolphin said:
The wording in the abstract might be a bit unclear but the figure is actually 99%:
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Ah, I was thinking of the "90% with both cognitive/emotional and physical exertion" bit. You're right; all of them, or nearly, had something recognizable as PEM.

This may be a reflection of the number of ppl w/Fukuda who also qualify for IOM or CCC; but it may be a reflection of the fact that they were all diagnosed by clinicians with expertise in ME. In other words, people who know what ME/CFS "looks like", so we're already selecting for patients with a disease where PEM is a feature.

[Edit -- I'll fix that in the original post, it's important.]

[Edit the second -- yeah, it's likely how they were recruited. Another study says it's 0.19 % meet Fukuda, and 0.11% meet CCC; so more than half of Fukuda folk meet CCC. That's from Nacul, 2011.]
 
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